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Hi all:

I got an amusing email from one of our IPADDU lurkers. She has given

me permission to post it. I think it is important and sometimes even

instructional to share our stories of life in the community with our

children. Some of the stories are quite amusing, while some are

distressing. In sharing them we continue to create solidarity and a

self of community among ourselves...

Ellen

" My husband and I always say, " people need to see what our lives are

like 24/7.

Other people get small samples, while for us, its every moment,

unless their in school or day program.

Our son always makes a very loud, charging-- " invading the store "

moment, when

we first walk in somewhere. I always feel a little bad for the

general public, because, I know for the first few seconds of

his " entrance " , they think either terrorists or

something equally threatening has come upon them.....so I feel bad

for a second, and then I get a secret chuckle..... I used to be a

little embarrassed but after a few years, I think for my mental

health, very little if anything that he does will bother me.

He is what he is.

A month or so ago......

There was a moment, in the women's bathroom, when he totally

stressed me out!!

A woman went into stall #2, and our son wanted stall #2 as well. So

he proceeded to stand outside the stall and " let the autism within

him, rule the moment!!! " I tried to quiet him but she was taking her

time, so after a bit, i just gave up and let him yell....

I thought maybe this might hurry her along, he was becoming more

impatient....

He was trying to hold himself together...he really was....then, he

starts trying to peer at her through the crack of the stall!!! Then

I totally stressed, turned him around and

we waited for a least 5 more minutes or so....eventually she came

out, I don't remember her being upset, so she probably didn't realize

what was happening, just that there was a crazy person in the women's

bathroom.

Someone else did try to help and direct him to the handicap stall but

he wanted stall #2. One time, I let him go in the men's by himself,

but he stayed in there for about 30 minutes and I kept having to ask

all these men, strangers, if the teenage boy in there, was alright?

They would all come out and say " yes, he's fine, just flapping his

arms and flushing the toilet " . :)

So after that episode he goes in the womens area with me.... "

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When Neal was younger, I began to see that it was not my job to shield the world

from interactions with him that confused them or stretched them or irritated

them.  I don't mean in all contexts, but in some.  My shorthand for this is

" Everyone is supposed to get 15 minutes of fame.  Therefore, everyone can put in

15 minutes of being patient with Neal. "

Although I'd like to grease the wheels on his social interactions, to help him

improve his conversational skills, I need to let go and let him learn from

others.

-Gail

 

From: ellenbronfeld <egskb@...>

Subject: Precious moments...

IPADDUnite

Date: Sunday, December 7, 2008, 9:08 PM

Hi all:

I got an amusing email from one of our IPADDU lurkers. She has given

me permission to post it. I think it is important and sometimes even

instructional to share our stories of life in the community with our

children. Some of the stories are quite amusing, while some are

distressing. In sharing them we continue to create solidarity and a

self of community among ourselves...

Ellen

" My husband and I always say, " people need to see what our lives are

like 24/7.

Other people get small samples, while for us, its every moment,

unless their in school or day program.

Our son always makes a very loud, charging-- " invading the store "

moment, when

we first walk in somewhere. I always feel a little bad for the

general public, because, I know for the first few seconds of

his " entrance " , they think either terrorists or

something equally threatening has come upon them.....so I feel bad

for a second, and then I get a secret chuckle..... I used to be a

little embarrassed but after a few years, I think for my mental

health, very little if anything that he does will bother me.

He is what he is.

A month or so ago......

There was a moment, in the women's bathroom, when he totally

stressed me out!!

A woman went into stall #2, and our son wanted stall #2 as well. So

he proceeded to stand outside the stall and " let the autism within

him, rule the moment!!! " I tried to quiet him but she was taking her

time, so after a bit, i just gave up and let him yell....

I thought maybe this might hurry her along, he was becoming more

impatient... .

He was trying to hold himself together...he really was....then, he

starts trying to peer at her through the crack of the stall!!! Then

I totally stressed, turned him around and

we waited for a least 5 more minutes or so....eventually she came

out, I don't remember her being upset, so she probably didn't realize

what was happening, just that there was a crazy person in the women's

bathroom.

Someone else did try to help and direct him to the handicap stall but

he wanted stall #2. One time, I let him go in the men's by himself,

but he stayed in there for about 30 minutes and I kept having to ask

all these men, strangers, if the teenage boy in there, was alright?

They would all come out and say " yes, he's fine, just flapping his

arms and flushing the toilet " . :)

So after that episode he goes in the womens area with me.... "

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Gail...

I like to think of it as a way of developing natural supports...which sometimes

works and sometimes does not...but when it works and others in the community

take the initiative with our children to help them fit in...it is so cool!

Ellen

Ellen Garber Bronfeld

egskb@...

Precious moments...

IPADDUnite

Date: Sunday, December 7, 2008, 9:08 PM

Hi all:

I got an amusing email from one of our IPADDU lurkers. She has given

me permission to post it. I think it is important and sometimes even

instructional to share our stories of life in the community with our

children. Some of the stories are quite amusing, while some are

distressing. In sharing them we continue to create solidarity and a

self of community among ourselves...

Ellen

" My husband and I always say, " people need to see what our lives are

like 24/7.

Other people get small samples, while for us, its every moment,

unless their in school or day program.

Our son always makes a very loud, charging-- " invading the store "

moment, when

we first walk in somewhere. I always feel a little bad for the

general public, because, I know for the first few seconds of

his " entrance " , they think either terrorists or

something equally threatening has come upon them.....so I feel bad

for a second, and then I get a secret chuckle..... I used to be a

little embarrassed but after a few years, I think for my mental

health, very little if anything that he does will bother me.

He is what he is.

A month or so ago......

There was a moment, in the women's bathroom, when he totally

stressed me out!!

A woman went into stall #2, and our son wanted stall #2 as well. So

he proceeded to stand outside the stall and " let the autism within

him, rule the moment!!! " I tried to quiet him but she was taking her

time, so after a bit, i just gave up and let him yell....

I thought maybe this might hurry her along, he was becoming more

impatient... .

He was trying to hold himself together...he really was....then, he

starts trying to peer at her through the crack of the stall!!! Then

I totally stressed, turned him around and

we waited for a least 5 more minutes or so....eventually she came

out, I don't remember her being upset, so she probably didn't realize

what was happening, just that there was a crazy person in the women's

bathroom.

Someone else did try to help and direct him to the handicap stall but

he wanted stall #2. One time, I let him go in the men's by himself,

but he stayed in there for about 30 minutes and I kept having to ask

all these men, strangers, if the teenage boy in there, was alright?

They would all come out and say " yes, he's fine, just flapping his

arms and flushing the toilet " . :)

So after that episode he goes in the womens area with me.... "

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